Hello,
So the 4th of July weekend was supposed to be my long awaited post-covid trip to finally visit my 91 year old Dad. He lives 500 miles away. Long story short I was going to be late, had to do a welfare check, he had fallen for the second time in a little over a week, then had to call 911 when I got there, then I finally convinced him to go to the hospital. He stayed there 4 days, discovered pneumonia, a wound on his back, a great deal of weight loss, some confusion and he was very weak. After the hospital they discharged him to rehab, let the games begin. The hospital gave me no advice on picking a rehab, they told me the 9 he got into and gave me an hour to pick. I was at work ( I work 2 jobs currently) and the social worker goes you need to pick now because I leave in an hour. So I picked based on some things in their website, not a great way I am sure. I am doubtful he will ever be able to go back to independent living. I am hoping for assisted living, but there are financial issues, and timing issues with him having an apartment, and everyone telling me to do different things, and I am so exhausted. I am going back down again this weekend and next for his birthday but it is a 10 hour drive each way, I travel at night because I have dogs and it's too hot during the day and I get back around 6 am and go to work. Last week I did a 40 hour and 38 hour stint. I cleaned his apartment when I wasn't at the hospital. I am the only child, my Mom died 20+ years ago. I would like to get him into assisted living where I live because I could do a lot more to support him, the distance is a real barrier. I am totally overwhelmed at the moment and don't even know how to start coordinating all of this. So far it has been very hard getting information out of the rehab place, they don't even have voice mail. Thanks for listening, any tips for those who have been there, done that would be great. Elizabeth
He may need more care than what an AL offers. He might need a nursing home. Check out a couple near you.
If the rehab isn't communicating with you, can you speak to his primary care doctor? The rehab will certainly speak to his doctor.
Moving him closer would help. Would he be willing to live in your area? Can he make decisions on his own?
Would you mind sharing a few more details?
- does he have cognitive impairment, or a dx of dementia?
- what state is he currently living in?
- are you his PoA? If so, springing or durable?
From one only to another, hang in there! Caregiving for him should never be onerous to you. Move him close to you if at all possible.
His children worked full time. They told him during his hospitalization that he would not be returning home. He reluctantly agreed to enter a nursing home. He was well cared for in his nursing home and lived another two years in the home. He died at age 96.
I truly hope that you find a viable solution for your situation. I don’t know how you could continue to travel back and forth, work and so on. It’s too much!
Speak with the nursing staff, his doctor and the hospital social worker. Reach out to everyone.
It sounds like your dad needs a NH with rehab vs. assisted living as they will ensure he gets the support he needs to get stronger. I doesn’t sound like living on his own is an option moving forward and moving closer to you is paramount. The drive isn’t sustainable and it’ll mentally wear you down not knowing what’s happening hundreds of miles away. Once nearby, as mention go every single day different times of the day so they never know when you’ll show up. I can’t stress how important it is for facilities (hospitals, NH, AL) to know a patient has family looking out for them. I’m an only child too so I can wholly relate to the overwhelm I felt caring for my parents simultaneously at one point. It’s all new right now, you’ll get a rhythm going.
Do you have any friends, cousins that can help? Transparency with your circle will be such a help for you. We can sometimes be so busy trying to keep things private/secret coupled with the overwhelm, it’s unnecessarily harder. Once I started telling people what was going on, I started receiving help in different ways. Good luck to you.
Hang in there!
So sorry that this is hitting you all at one time. If your dad is now in rehab, you have some time to slow down a bit. Please don't rush to "complete" anything. Use your time to research and to be with your dad.
As for household, secure anything of value: paperwork, jewelry... anything that a thief might want to take. Clear out the fridge and the pantry since it will be awhile before dad could access his home. Then, hire a bonded housecleaning crew to go in and clean the home - thoroughly. This way you can spend time with dad and not housecleaning. Do the same thing with his yard.
When you have time at home, research online all the assisted living and full time care residential facilities near you that accept Medicare payments and Medicaid payments. Sadly, most seniors do not have enough resources and usually end up on Medicaid. Visit your top 3 choices for assisted living and total care. I would recommend finding a place that can move him from assisted living to full care when the time comes, While you are researching, also look for places that do hospice. Given your dad's age, hospice may be needed at some point.
Based on your research, make arrangements for dad to move from rehab to you when he is "done" with rehab. That date is usually dependent on his insurance. The social worker at the rehab facility should be able to help you with this.
Tell the rehab Place where he'll be going.
Check with his Health Insurance and see what is covered.
If your Dad can go back to his own place he should have some Caregiver help.
If your Dad has been in the Military, he can get up to 30 hrs a week Caregiver help.
You might ask about Respite Home Health Care where a Nurse will gi to your Dad's home once a week to check on him and do his vital signs. They will also send an Aide 2-3 times a week to help with bathing and they will send Therapist 2-3 times a week to help him.
You can call Senior Help line where he is and let them know that you would like to move him close to you and see what help they can offer.
Prayers
Hopefully your Dad already has a case manager and THAT person is your immediate go-to for the very basics. From medical updates to dietary, the rehab center needs to provide each nugget for your sanity.
I would get a notebook and an accordion folder to keep with you- sounds paltry, I know, but very handy for keeping information when so much is on your shoulders. Like someone else said , at least he is being cared for .. it’s not always what we want for our parents, I know.
The program ‘ A Place for Mom’ online can also help you to find locations for your Dad. It was one less thing for me to plan.
Ascertain POA forms - you can get them online for your state- and keep them in the accordion folder.
Can you do any of your job remotely/ online?
Visiting Home Nurses can also be a help for the transition time for Dad if he can return home after rehab. They offer more support than some assisted living facilities and you would have immediate feedback for peace of mind.
Breathe, dear lady. You can only do so much. Hugs !
The path you are on right now - working long hours, driving long distances and trying to handle all the situations regarding your dad, is not sustainable for much longer. It seems that your work environments are not helping the matter. Taking small steps, one at a time, is the only way to do this. Break everything down into steps - and then check them off as you go. Write everything down - I kept a steno pad with every note so I wouldn't have to remember things and I could look back and see what date/time/person I talked to and what they said or what was talked about. No having to remember anything - cuz I couldn't remember squat!
Start with - Can you leave you dogs with a friend or board them during those times you have to drive to help?
Your dad is in a facility - it might not be the best place for him right not, but it is a place. This gives you the ability and time to do further research. Ask for the facility's plan of care for your dad- it will show you what the plan is for your dad. He must be on Medicare so you do have up to 100 days to have him stay there, as long as he is participating in trying to improve and showing improvement.
Can you, on your next trip, arrange to have a dedicated 1 on 1 meeting with the facility providers to go over your dad's Plan of Care- the administrator, the social worker, the PT person, the Nursing Director - should all be in attendance - real time or via zoom. It will give you an idea what their plans and goals are for him and the estimated time line for this. Can you set up a bi-weekly 1on1 phone call meeting with the facility to get updates?
Partner with a service such as CarePatrol Senior Placement to help determine the best facility for your dad based on needs and finances (I did and it helped immensely in determining which facility to place my mother). Although A Place for Mom also is a source, I found that the 'agent' I was assigned was actually working out of state and had never, personally, been to any of the recommended facilities. CarePatrol does- or at least the one I worked with did It is a free service, so utilize what you can.
This is a biggie - Is all your dad's legal paperwork in order - appointing you as POA and that would allow you to handle health care decisions and financial matters? If he does, do you have copies of them (make lots of copies - many many places want their own copies of these dox). If he doesn't have POA dox, and he isn't of 'sound mind' then you need to talk to an atty cuz you can't just appoint yourself.
Btw- his confusion could be the result of his hospital stay/medications. My mother had post-operative delirium/confusion that gradually subsided 10 days after being released from the hospital - but during those 10 days EVERY medical person deemed her with 'dementia' - and she did not HAVE dementia- things cleared up after those 10 days.
I agree with another poster here - next trip, remove as many valuables from his place as possible; clean out frig and freezer (in case lose power) (just toss it all). Then research cleaning services (CarePatrol might even be able to help with that as well), and then next trip see about hiring someone 2x mo.
It is challenging when you are the only one who is responsible for absolutely everything and don't have someone else to partner with - even if it is just talking about options or ideas. This is where this forum helped me as well because so many have gone through something similar.
Your dilemma is heartbreaking. I am sorry for your situation.
the only answer would be to get your dear father into a SNF near your home because what you’re doing now will eventually take a toll on your physical and mental health. Get help legally to assist you. I’m not sure where to go but search. I’m very familiar with the falls then rehab merrygoround because I’ve been through it. Not to say rehab isn’t worthy but for frail, older individuals sometimes with dementia, it’s not always what’s needed.
You can’t continue on your current journey and remain whole. I hope you find help.
Totally agree with getting your father into assisted living near you. Proximity will make it much easier for you to keep track of your father's situation and address any future problems. You just can't do this remotely over the phone.
Then adopt a one-day at a time philosophy. You do the best you can. Don't expect perfection. Good luck. You can do this.
P.S. Got a friend who can help with your dogs in a pinch? You will need to create a support network for yourself. Keep asking for ideas and referrals.
If you don’t like a place you can always move him. My mom was at 3 different places last year until we found the best fit. Ask about emergency placement near you, Medicare may cover the first 20 days, I’m not sure about this but know they will cover rehab. Call any facility you are considering ask ask how they can help you with paperwork, etc. That alone will give you an idea of the kind of place it is. And remember that Mose senior facilities are for-profit and want to keep beds filled.
FYI you will need to provide furniture, linens, etc in AL. Although some keep a furnished respite room for short term stays which might be a help to you.
Check with Social Security and Medicare and any other insurance about what documentation you need if you do plan to move your dad. I hope you have POA and MPOA documents and/or fiduciary in place. States may not recognize a POA issued in another state and the Federal government doesn’t recognize a POA so you will need to be appointed fiduciary to deal with Medicare and SS. Also you need to get banking and any other legal matters sorted sooner than later. Get yourself added as a signer on his banking accounts ASAP. If your dad had an attorney set up an appointment to review wills, etc.
Have you discussed getting family leave from your job(s)? Even just a few weeks can give you some breathing time to regroup and do some visiting. Ask friends and family for help, this isn’t an easy job for one person. And make sure you keep your Dad updated and agreeable.
Good luck, keep us updated.
* Really good advice.
* People call me when in need of these things as I offer care management. Try to find someone in your area who assists with managing all this, be it an ind person like myself or a [medical] social worker; it will pay off in the longer run to pay a bit more upfront for a few hours of guidance now.
* S-T-O-P breathe, meditate (for 10 minutes).
If you do not take the breaks you need TO FUNCTION, you will burn out and not be able to care for yourself, your dogs, or help your dad. This is essential.
- I usually start when I wake up asking God to help me and I am not religious (I lean to Buddhism and spirituality). Still; this helps me be willing to humble myself to what I need - and need to do.
- Exercise is important for me. You probably get enough of that with the dogs. ALTHOUGH... a walking meditation may help you considerably. Measured steps as you become aware of how / when your weight shifts (you could walk slow with the dogs - so you both get what you need).
* Choosing a care facility is 6 to 1 .... 1/2 dozen of the other. You do what you can with the information (and time) you have. Don't get on your own case about this.
Let it go - move on --- to calm, breathing.
* Realize it is one foot in front of the other, or one decision / need at a time. Perhaps write down all that you need to do and/or all that you dad needs and then prioritize how / who you call / do what when. Seeing all of it in black and white and the process of writing may help you.
- Get a binder and track calls (who, what and when) so you can refer back and track behavior (your dad's).
* I'm not sure of moving him closer to you is an option?
* DON'T LISTEN TO EVERYONE TELLING YOU WHAT TO DO.
- Write down supportive feedback / input. If you don't know if it is supportive or helpful, instead of going into IMMEDIATE overwhelm, write it down and look at it a few hours later, or the next day. Who are these people? medical personnel? housing/facilities?
- Be okay with not knowing how to proceed or the best course of action. We are all on a learning curve 'as we do' - if you find someone who really listens and feels helpful, listen to them and let the others be in the background. Avoid overwhelm so you can expend your energy as you need to.
- Tell people you are overwhelmed and how you can 'hear' them - writing notes, phone call, text, emails? A list of priorities? What works for you?
* Yes, your dad may not be able to go back to ind living. Consider, if an option to have a person move in - a 'live-in' caregiver. They will need days off however, they will get free rent for however many hours you need them available.
* This is overwhelming - for several reasons and mainly because people (family) are not experienced or educated in how to deal with these things until it happened NOW in the moment. Many people do not know how to set boundaries (for self-care) or have any knowledge of what dementia is and how to interact with their loved one. It is a lot to deal with. Make sure legal matters are in order and money is managed (your dad's) and track expenses / expenditures / incoming. Track it.
* Distance seems to be a major issues for you. If at all possible, stop these 9-10 hours of driving. Fly or have someone else drive (so you can sleep) if at all possible.
* Enlist neighbors - yours (and those close to your dad, if possible) for their support.
* Know it is more than okay to need support and lean on others (when it actually is helpful).
* Keep writing to us here - even if to blow off steam. We all know that 'exhaustion' level. I won't go into what I'm doing - if I can meditate for 10 m. a day, stretch or do my slow jogging for 20 mm. eat more on the healthy side when juggling 20 balls in the air.
Gena / Touch Matters